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hi my name is kuulei, we live in hawaii. i have a daughter Leilani who is nine

months old and was diaganosed with mds when she was born. leilani is my third

daughter, kuulei is my first girl and she is 21, hokulani is my second girl &

she is 2 1/2 . ii felt very devasted the first few days of her life, all of a

sudden everything i imagined/dreamed about changed. i knew with time i would

feel differently, and i do. I love her so much. it gets mentally tough when at

nine months your still carrying her around and trying to teach her to sit on her

own, but it has truly been an experience. thank god for all the loving supprot

from family & friends. looking forward to learning things thru this forum and to

help encourage & be encouraged. thank you.

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Hi Kuulei, My name is , I have 4 kids, 2 boys, 7, Hayden 4, and

twin girls Addelyn (mds) and andrea 9 months. I know how you feel about

carrying a 9 month old around.Adde isn't sitting up either. I'm working hard

with her I have in pt. class once a week til she can sit up. The girls were born

5 weeks early so Adde was only 3lbs 14oz. and was 5lbs 14oz. The Doctor

tells me that she gonna be slow, because she born early and that she has mds and

that her time will come. Kuulei, if you ever want to talk please feel free to

e-mail at the4hellards@.... Take Care,

Kuulei wrote: hi my name is kuulei, we

live in hawaii. i have a daughter Leilani who is nine months old and was

diaganosed with mds when she was born. leilani is my third daughter, kuulei is

my first girl and she is 21, hokulani is my second girl & she is 2 1/2 . ii felt

very devasted the first few days of her life, all of a sudden everything i

imagined/dreamed about changed. i knew with time i would feel differently, and i

do. I love her so much. it gets mentally tough when at nine months your still

carrying her around and trying to teach her to sit on her own, but it has truly

been an experience. thank god for all the loving supprot from family & friends.

looking forward to learning things thru this forum and to help encourage & be

encouraged. thank you.

__________________________________________________

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